Autism Parents and Celebrity Endorsements

Now that the Jenny McCarthy bandwagon appears to be slowing down it is as well to remember that lots of parents are writing intelligent, heart warming and thought provoking accounts of their experience in raising a child with autism. Lacking McCarthy’s dubious claims to fame and fortune, not many of them get the chance to publish a book or be courted by Oprah or People Magazine. These parents are all intervening to help their children. But unlike McCarthy they do not subscribe to the view that,

“……as long as autism is considered a mental disorder or genetic disorder, then the list of referral specialists is quite predictable: neurologists, geneticists, behavioral pediatrician, psychiatrist, and therapist for mom, since most of the issues are her fault anyway. But, you know what, despite all the evaluations and platitudes, the child somehow improves only minimally, if at all.Autism, as I see it, steals the soul from the child; then, if allowed, relentlessly sucks life’s marrow out of the family members one by one…….”

Nice, eh? A typical rant from one of mercury malicia? Not exactly. It is part of the forward to McCarthy’s book. The author is Jerry Kartzinel MD, the medical director of paediatric services at Andrew Wakefield’s Thoughtful House Clinic in Austin, Texas. Their website is down at the moment because it has exceeded its bandwidth. I would like to think their server has been overwhelmed with angry parents seeking to complain about Kartzinel’s dehumanizing comments about autism. But it is more likely that the Jerry and Jenny media roadshow has sent them a whole new raft of hopefuls looking for a magic cure. There is a lively discussion about Kartzinel’s remarks over on Left Brain/Right Brain.

But back to autism parents.

As well as the members of the autism hub there are lots of others out there. Thanks to McCarthy for bringing these to my attention.

If we go beyond the mutual backslapping of Kartzinel and McCarthy, it is true that there are so many books, methods and programmes out there that we often rely on other people’s endorsements to guide our choices. If an acknowledged expert in the field is quoted on the dust jacket or writes a favourable review it can only help sales. We also have autistic celebrities, who may not be autism experts but speak with some authority because they have written and spoken about their autism in ways that connect to the experience of others on the autistic spectrum and their families.

Two of the most famous examples are Temple Grandin and Donna Williams. Sharon has blogged about a recent lecture in Belfast by Donna Williams. Sharon noted all her points of agreement with Donna Williams.

As the lecture progressed however, I was noting more things that I didn’t agree with. First she spoke about cranial sacral therapy, saying it benefited her, which I don’t doubt. She suggested it could benefit other autistic people too, and again, maybe it could. But as a technique, there’s no evidence of any effectiveness and the claims made sound rather like, oh what’s that word…quackery.She also mentioned all sorts of medical problems, and again either stated or implied (I can’t remember) that these are common place in autistic people. She mentioned her own issues; salicylate intolerance, immune deficiency, gluten and dairy intolerance. She recommended that anyone thinking that their children may be affected by such issues, should investigate GF/CF diets, low sugar and low salicylate diets. She referred to the ‘leaky gut’ theory, stating that for many autistic people, gluten and casein can act like opiates. In fact, when one woman asked for advice on her son’s habit of head banging, Donna again mentioned this, saying this is sometimes a symptom of what she termed ‘brain fog’, that is, undigested enzymes crossing the blood-brain barrier.What was missing from all these discussions of medical issues, both in the main lecture and while answering questions from the audience later, was any mention of doctors or dietitians. Donna mentioned naturopaths, chiropractors, reflexologists and osteopaths. These are not practitioners of evidence based therapies.

Sharon wrote another post about the sponsors of Donna Williams’ lecture – P2P Autism – who are trying to spread the DAN! message in Ireland. Donna Williams appeared in the comments section to defend her position and Sharon has another post in which she deals with all Donna’s points.

The last time I heard Temple Grandin speak she ended her talk with an endorsement for the ARI website. The website does contain an interesting FAQ by Temple Grandin about sensory sensitivities and aspects of autistic behaviour. It also contains a guide for new parents co-authored by Temple Grandin, Bernard Rimland, Stephen M. Edelson and James B. Adams. The only significant point of difference between them is that Temple Grandin supports the selective use of psychiatric medicines in older children and adults.

The various topics covered in this overview paper for parents of young autistic children represent, for the most part, a consensus of the views, based on research and personal experience, of all four authors. However, the authors differ in their opinions on the role of psychoactive drugs should play. We will present you with the conflicting opinions, so you can decide for yourself.

Grandin has a relatively accepting position on the use of psychiatric medications in autistic children. She feels that it is worthwhile to consider drugs as a viable and useful treatment. Rimland and Edelson, on the other hand, are strongly opposed to the use of drugs except as a possible last resort, etc. – They feel the risks are great and consistently outweigh the benefits. Adams has an intermediate view.

But regarding the DAN! protocol (safe and innovative ) and ABA (most effective ) they were all agreed. On the question of vaccines they were not fully committed.

The possible causative role of vaccinations, many of which were added to the vaccination schedule in the 1980’s, is a matter of considerable controversy at present.

That was then. ARI is firmly committed to the autism/vaccine hypothesis now.

Autism is a complex disorder with many contributing factors. While there are many theories as to the cause of the increase, ARI believes environmental factors—including unprecedented exposure to toxic substances and over-vaccination of infants and young children—are the key factors triggering this devastating epidemic. Emerging research supports this fact, making it clear that autism is a whole-body illness triggering a biological brain disorder and ARI continues investigating various possible causal factors.

Kenneth Bock fully endorses the vaccine hypothesis, as he makes clear on his website. He is also a big wheel within ARI/DAN! who speaks at international conferences and is president of the American College for Advancement in Medicine. ACAM is actually a trade organization for chelationists and other ‘alternative’ health practitioners. Bock has written a book outlining his views which received this glowing testimonial

Both Donna Williams and Temple Grandin have added greatly to our understanding of autism from their autobiographical accounts and their public lectures. But their support for the idea that alternative medical interventions can help some childen and adults gives credibility to the pseudoscience that informs these interventions, especially in the eyes of parents. I think it is time to challenge them on this. Thank you to Sharon for making an excellent start.

We have to move away from faux-science. It is ironic that the alties denigration of the core values of real science is only matched by their desire to take on the peripheral trappings of science. This ‘wannabe’ desire for respectability, while denigrating actual, existing, respectable science can confuse non-scientists. This may be their intention. It seems to have worked with the Autism Society of America. CEO Leo Grossman has recently endorsed a book by Bryan Jepson, one of Jerry Kartzinel’s partners in crime at Thoughtful House.

Lee Grossman, parent of an autistic child; President and CEO, Autism Society of America“The new PDR of autism for parents and physicians. An important book that everyone dealing with autism must own.”

There is no science worthy of the name to support the biomedical, curebie position on autism. A combination of clever PR and behind the scenes politicking has elevated the biomed lobby to a position beyond their station. It is time to prick the bubble.

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16 thoughts on “Autism Parents and Celebrity Endorsements”

“But, you know what, despite all the evaluations and platitudes, the child somehow improves only minimally, if at all.”

I had missed that previous part. So there were multiple falsehoods in that statement by Kartzinel. Here’s a guy who claims to treat autism, but apparently does not know the first thing about autistic people, developmental progress of autistics, outcome of autistics, evolution of parental views, the social model of diability, human decency or respect for people’s dignity. Could he possibly be more of an ass? Could he suck more? I don’t think I have ever encountered a worse piece of crap in my life.

I think you could add another two or three names of “autistic speakers” or “autistic quasi-celebs” who have also bought into the real junk of “biomed” which is not to say that all diets are evil (they are important for people who have celiac disease for instance, but then there’s the problem of sort of “self diagnosed” or “mommy instinct” diagnosed “celiac” or food allergies). Stephen Shore may not have come out and recommended IVIG or told people not to get vaccinated, but he had a relationship of some sort going with Jeff Bradstreet that lasted a few years, if I recall, and Shore has not come out and decried the garbage that Bradstreet has been promoting since he (Bradstreet) has come on the scene (like 8 years ago or thereabouts), and adding to the problem Shore, Grandin and others will take speaking engagements at the quackery fests giving the impression that they support what’s being promoted there, even if they don’t, or don’t entirely support it.

They aren’t screaming “stop the DAN! madness!” that’s for sure, and they might do a lot of good if they did. Though… they might lose out on some of their speakers fees, I don’t know how much they depend on those.

One thing that has really bothered me, too, is that the autistics who are geniuses at math (not all are, obviously) didn’t catch the epidemic nonsense early on because it was not that hard to get the IDEA and DDS data (for free) and see what was going on. Michelle Dawson did, though, thank goodness, along with Drs. Gernsbacher and Goldsmith.

John Elder Robison (Asperger’s guy, has a new book out) seemed to be expressing sympathy with Kim Stagliano’s degrading descriptions of her daughters and her insistance that she’s looking for a cure for their autism. He said something like, “well, I don’t want a cure, but I can imagine why Kim might say she wants one for her daughters…” I wonder if will eventually be making out-of-his-depth comments on the vaccine schedule or the reported wonders of the GFCF diet.

As the mom of a 4 year old with autism, I think you might appreciate my blog entry, “Oprah Does Autism.” If I were a little bit more blog savvy, I would know how to copy the link in without it being ten miles long … So I just copied over the post. Hope that’s okay.

******

One of my goals in life is to be a guest on Oprah.

Not because of the opportunity to be on national TV.

Not because I would get to hang out on the couch, playing girlfriend with one of the most powerful women in the world. (Having lived in Chicago for four years, I actually got to attend a couple of tapings. It was seriously cool.)

I really just want the once-in-a-lifetime opportunity to have Andre do my hair and makeup. How amazing to have the miracle worker helping me look my most fabulous prior to appearing on national television for all my former boyfriends to see.

I can only dream of the day…

Today it was Jenny McCarthy and Holly Robinson Peete’s turn to sit in Andre’s chair. (Like they really need the help.) Looking absolutely luminous, they sat on the couch with Oprah and passionately and genuinely shared the stories of their sons, both of whom have been diagnosed with autism. I cried, laughed and completely related to them. Thank God they are stepping up and speaking out.

Their overall message was one of hope:

Autism is not a developmental death sentence.

Our kids can get better.

As the mom of a severely affected little boy, comments like theirs are intoxicating. I simply can’t hear them enough.

But (isn’t there always a “But”) to be completely candid, there were some comments that, pardon my Texas vernacular, just didn’t sit right.

When Jenny stated more than once that “Evan is my science…” I worried. (If you follow this blog at all, you probably have already determined that I’m a world class worrier.) I’m not saying I don’t believe her story. The video of Jenny working with her son was absolutely amazing. I almost cried when Evan smiled on camera and said “Trust me mom.” So priceless.

What I wouldn’t give to hear Jack say that.

For the sake of full disclosure, I must admit I’ve tried some alternative therapies here and there with Jack. Diet. Supplements. As long as it’s not potentially harmful, I’m open. (Although the fish oil did cause some green poop issues that I won’t go into here. Won’t be trying that again anytime soon.) But so far in our case, these approaches haven’t seemed to bring about any significant change, pardon the pun, to speak of. Jack has responded much better to the more mainstream behavioral, speech and occupational therapies. The ones that don’t result in neon poop.

One analogy Jenny made that really made sense to me was that the alternative biomedical treatments that worked so well for Evan are much like chemotherapy. Some cancer patients benefit from chemo, some don’t.

I suppose we’re in the “don’t” category?

What to do…

As parents of kids with autism it’s such a fine line we walk. We have to take full advantage of that “window of opportunity” that Holly spoke about on the show. We have to be open to trying everything we can to maximize our children’s potenetial. That irritating clock is ticking, ticking, ticking.

But as for me and my mommy gut, here’s how I see it:

Jack is not my science.

He’s not my scienctific experiment.

He’s a sick little boy who needs some credible science from someone familiar with the scientific method.

The kind of science defined in Webster’s dictionary:

Main Entry: sci•ence
Pronunciation: ‘sI-&n(t)s
Function: noun
knowledge or a system of knowledge covering general truths or the operation of general laws especially as obtained and tested through scientific method

There’s just not enough of this science out there when it comes to autism. In fact, it’s shocking how little there is. (In 2005, the $29 billion National Institutes of Health budget allocated a dismal 0.3% to autism research.) My guess is, that even though 1 in 150 children are diagnosed with autism, more funds are probably allocated to nail fungus.

So even though I would love to be a guest on the show, and be transformed in Andre’s chair of beauty magic, my hope is that maybe next time (and hopefully there will be many next times) that Oprah will also include someone in the discussion who actually knows a bit about autism-related science.

There’s no such thing as a shortcut to any place worth going. Especially for the “don’ts” like my Jack.

I’ll laugh and cry with my autism girlfriends Jenny and Holly along the way. It’s cathartic. But when it comes to science, I need the geek in the white lab coat more than I need the hottie in the bunny costume.

I don’t know much about Stephen Shore, but there’s an article by him in the ‘Autism File’ magazine I mentioned on my blog. It’s called ‘Mixed Marriage’ and is about the NT/autie and Chinese born/US citizen contrasts between his wife and himself. The article is OK, but again by agreeing to write for such a biomed based magazine, he’s giving implicit support to their ethos. He has also, they say, agreed to write for them regularly.

I don’t agree with you on the Temple Grandin issue about antidepressants (biomed). I do agree with Temple that antidepressants help adults, including Aspies, with anxiety disorders and depression. They can be dangerous for kids, though. This is widely accepted in the medical industry.

Mark
I agree with you. I was quoting from a DAN guide for parents that Temple co-authored. Regarding the link:

“Having just met Jenny in person at the recent Whole Child Whole Planet Expo in Los Angeles, we can attest to her utmost sincerity to use her celebrity to spread the message. What impresses us even more is that, in addition to being an absolutely delightful, warm, funny, dedicated lady, Jenny is putting her money where her mouth is by starting up a website especially for Indigo Moms.”

Jenny McCarthy seems no longer interested in indigo moms and crystal children. The Indogo Moms website she set up has been closed down. I think that with McCarthy it is more a case of putting her mouth where the money is.

I saw Dr Kartzinel on Larry King and he seems very well spoken and made a lot of sense, even if you disagree with his treatments/theories. He spoke in measured and qualified terms without making any extreme statements. From the comments here and on other blogs, it just shows that you can take anything out of context. He’s the father of an autistic spectrum child and people here are vilifying him.

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